I’m so EXTRA! These were the perfect words adorably emblazoned on the shirt a friend made* for my daughter, Grace. Grace is extra adorable (my unbiased opinion), empathetic, and persistent. She also happens to have an extra chromosome. As parents of kids with Down syndrome, we are eager to share that this makes our children extra cute, extra sensitive, extra <fill in the blank with awesomeness>. While I can’t argue that, I think we are less likely to admit in mixed company that their extra chromosomes often mean our children also require extra energy. Helping them thrive involves extra time, attention, accommodations, therapy, and medical care, among other things.
We are not only parents. We are, by default, caregivers and advocates, therapists and nurses, behavioral support specialists and experts in IEPs and special education law. Or at least we often feel like we should be to get our children the support they deserve. Of course, parents of typical kids have challenges, too. Some peoples’ issues aren’t always as apparent as ours, but everyone is dealing with something. With DS, though, we have more pervasive concerns that, unlike most parents’, start at birth or often before, affect most every aspect of our lives, and are more likely to persist throughout the lifespan. Like Alethea Mshar thoughtfully describes here, much of this extra effort may go unnoticed by family and friends who struggle to understand our situations well enough to be supportive in the way we need.
In the five years since Grace’s birth and diagnosis, I have seen an encouraging increase in the prevalence and acceptance of DS in the general culture. With it has seemed to come an influx of information to educate and support parents, caretakers, and self-advocates. While exciting, wading through all of this adds even more to our already heavy loads. My idea for The Extra Life sprung from this realization.
As a lifelong worrier, my need for control went into overdrive when we received Grace’s diagnoses with Down syndrome at birth and a severe heart defect one week later. This jarring news overwhelmed me in seemingly incessant waves. Among it all, I loved her so much and sought to protect her with almost primal intensity. With so many uncertainties, I grasped for control of something I could do to set her on the life path I knew she deserved. Truthfully, there was very little in my life important to me at that time that I could actually control. So, instead, I educated myself and started looking toward things I could do, like engage in therapy sessions and track her medical care. As she grew and new challenges and opportunities arose, I’ve spent many nights and early mornings rocking my horrible sleeper while researching sign language, dysphagia, apraxia of speech, and behavior interventions, among other things. As we prepare to send Grace to kindergarten next year, my research has shifted to inclusion, IEPs, special education law, and building friendships. At some point, I matured and realize that there aren’t solutions to every issue I perceive as a complication. I’ve also learned that letting time pass is often the best “solution” to many challenges we’ve encountered. But, as much as I can lighten your load (I know it can be a heavy one), I’m delighted and honored to do that.
My goal here at The Extra Life is to share relatable perspectives but also to ease the burden of research by providing practical resources in an honest forum addressing the triumphs and challenges of the extra life.
What you will find here:
- Curated lists of resources on relevant topics
- Book recommendations and reviews
- Academic research distilled into digestible bites
- Personal stories and tips for day-to-day life
- Lists of relevant, helpful products
What you won’t find here:
- Photographs that look like they were taken by a professional #nofilter
- Posts that explore only the bright and easy side of life #nofilter #idontreallyhashtag #canutell?
I can’t resist sharing some personal stories. But mainly I hope to share lessons and links to help you manage day-to-day and big-picture issues where personal experience and research-based interventions can be invaluable.
Follow along here on the blog or on Facebook, and don’t forget to sign up for email updates. In the meantime, check out my Resources page and growing Pinterest boards. Do you have suggestions for topics or resources that would be helpful, I’d love to hear from you at firstname.lastname@example.org. I look forward to growing this community with you as a part of it, because we’re all in this together.
*This shirt always gives people a big smile and a little chuckle. Talk to Miranda at Jack Spratt Designs and let her design one for the extra person in your life. (Not a sponsorship. Just a great friend who designs adorable shirts.)